Waiting for diagnosis


#1

Hello I have plucked up the courage to add myself on this forum. I am at the moment waiting for a scan to confirm whether or not I have parkinsons. My loss of taste and smell began six months ago and shortly after a tremor in my right arm. After being cleared by the ENT doctors I then got passed to the neuro team. The last thing I expected the consultant to say was that she felt I could have PD. I am at present waiting for a total shoulder replacement and am convinced the shoulder may be causing all this and not PD. After reading some of your posts though I can relate to some of the other symptoms but am frightened to think this could be the result. I spoke to someone the support team who was so helpful but the waiting is really hard! 


#2

Lexi,

Welcome to the forum. Waiting for diagnosis is hard. As you are finding out there is no single test that confirms parkinson's so diagnosis is mostly a case of eliminating all the other potential causes of symptoms. Stiffness in the shoulder can be a early symptom, it was for me. 

You will find this forum full of people who know exactly what you are going through and can help you. If your symptoms are caused by parkinson's you might take comfort from the fact that for many of us it can be slow progressing and well controlled by drugs.  If you need more expert help you can contact the helpline team (their free phone number is at the top of the page). If they can't help you directly they can most likely point you at someone who can.

How long will you have to wait for your shoulder op? Have you got a date for a scan?

Elegant Fowl

 


#3

Thank you so much for replying. Just received letter for MRI 13th Nov. Don't think DaT scan sorted yet. Shoulder replacement is for previous injury years ago. They say 4-6 weeks. I was really hoping for an answer before the op but even with chasing up doesn't seem to make much difference. 


#4

Thank you so much for replying. My shoulder replacement op which is for an old injury should now b 4-6 weeks. Fingers crossed. MRI on 13 Nov. No news on DaT scan. I have a very supportive family and still work but it's all the waiting and uncertanty that's so hard. 


#5

Hi Lexi

 

i am recently diagnosed after about a year of tests. I lost my sense of smell a while ago but had no idea it was an early sign of Parkinson's. I have also had shoulder pain which I have been told is a rota cuff injury but suspect that it is related to PD my other symtoms are a shuffling left leg so I walk as if I am drunk lol. No meds yet but seeing my neurologist in February.

diagnosis take ages so hang on in there any if we ca be of any help please post or personal message

Tomx

 


#6

hello Tom

thank you for your reply. A few people on here have mentioned a loss of smell. I seem to have lost both smell and taste. My shoulder is due for a total replacement due to arthritis from an old injury. This is why I wondered if the shaking was connected to that but the neuro person says not. She almost sure it's pd. We will see. My jaw sometimes tremors too and foot but can't say I have any dragging in my leg. 

I see you have a wait too. Thank you for your reassurance. I appreciate it as if I'm totally honest I'm really scared to hear the final diagnosis. I wish you all the best and hope your appt goes ok.

 

sue


#7

welcome lex1255 ,by the way you need to turn your picture round you might get a stiff neck big grin


#8

Hi gus, thanks for the welcome.  I am really struggling to turn piccie round so have let the team do it. It made me laugh though when I saw it. I can use a computer but anything technical I'm useless!!!


#9

yep same as me i cant stand  computers,texting whats a matter with a phone call my daughters sometimes write my long messages there so quick even on there phone with small buttons , well we all have to move with the times eye roll


#10

Please forgive me for having a little moan but I need to at this moment in time. I chased up neuro clinic to see if my referral had gone yet for Datscan. apparently it has but not classed as urgent

I feel so frustrated as to me it's very real and urgent that I know whether it' s PD or not. No one seems to be in a rush to get it sorted one way or another and I'm due for a major shoulder op soon. 

The mri​ is in November, Friday 13th to be precise!!!!!

Is it selfish of me to want to sort his out and have answers. getting stressed with the whole thing!


#11

Hii Lexi

  It takes at least two months for the  follow-up letter to my GP to arrive after any specialist appointment at my local hospital even if a change in medication is involved.  It makes me think of the one time custom of putting the older veg. to the front of the stall  each day with the new at the back so that nobody ever got fresh if you  follow my drift.  The backlogs seem to be accepted as normal..  If you  were older,, they would most probably  rely on the clinical assessment and dx. of PD  as the more likely  but  they need to be doubly sureat your age     I was left to draw my own conclusion from the fact that the "probably" which preceded "idiosyncratic (means cause unknown) Parkinsons"    in the first GP letter had disappeared by the next letter my having responded well to the meds. i.e. if you respond to the PD drug its PD.     By the way you might want to bear in mind that  frozen shoulder often precedes by a couple of years the onset of obvious  Parkinsons symptoms. 

Its a good thing you  have found this site as on diagnosis 60% of PD patients receive no information whatsoever  according to a survey by PD UK.   All their  publications are excellent and very clear.  If you join PD UK - I think its still only £4  p.a.- you get a whole bunch of leaflets etc.   Helpline above can help with welfare,  employment as well as medical issues.  When I was dx six years ago, I was left in limbo for six months and the Helpline was a godsend.  Most GP's will admit they know little about Parkinsons

Hope you get some answers soon


#12

hI EP

Thank you for such an informative reply. at least I know it's more the norm then to be left to manage until they come to a firm decision. it really has helped me just by reading others problems and advice. you don't feel you are so alone with it all. Parkinsons was on my dads side of the family so whether it is showing its face generations down the line I don't know. 

Thank you again. I really appreciate all the advice from here.

Take care 

 


#13

Good luck Lexi. This is new  for a lot of us. The contributions are helpful.I too had mysterious shoulder pains, which at the time I didn`t understand.I don`t know if they are related to Parkinsons.

Frances

 


#14

Thank you France's. All the best to you too. This will make you chuckle. I have turned up at my doctors surgery for fasting blood sugar wearing two completely different shoes!! One blue and one black just to add to the embarrassment!!!


#15

Hi Lexi

i think you are safe there I don't think I have seen anywhere wearing different colour shoes is a symtom of Pd lol


#16

Well, that's a huge relief! it's me being totally scatty! Made my friend laugh when I arrived there.